1. Hari Krishna Salana, MBBS and Priscah Mujuru, DrPH RN
Understanding the barriers of parents to consent children's participation in a rural community school-based asthma research study
Hari Krishna Salana, MBBS and Priscah Mujuru, DrPH RN
West Virginia University, Morgantown, WV, USA.
ABSTRACT
Introduction: According to the NCHS (2003), prevalence of asthma among children in WV was 11.1% compared to the national average of 8.9%. The higher rates may be due to factors distinct to rural communities such as low educational attainment, low health awareness and limited healthcare access. Despite the higher disease burden and disparities in rural communities, reasons for parents' reluctance to participate in research studies are not well understood. Methods: A minimal risk study to assess the level of asthma control using a 9-point questionnaire was conducted in elementary school children in 2 rural WV counties. Following the initial low response to recruitment, post card reminders were sent home to solicit participation.
Results: In the first phase, 69 asthmatic children and their parents were contacted and invited via mail, phone and in-person meetings to participate in the study. Of these, 32% agreed to participate in the study.
Conclusions: Socioeconomic barriers, health awareness levels and disease management of children are important indirect factors effecting parental consent for children's participation in research studies. Efforts should be made to address non-participation and suitable measures taken to minimize barriers to recruitment.
METHODS
Identification of Participants and Resources: Two rural counties with high rates of children with asthma (12.7% in Raleigh and 9.1% in Fayette). To collaborate with parents, school health nurses were recruited as Pilot site coordinators (PSC). Primary care providers (PCP) were identified for referral of students with low ACT scores and revision/development of an
individualized asthma action plan (AAP) as appropriate.
Recruitment and follow-up: A package with IRB approved
consent and assent forms, information about the study and a
letter inviting their participation was sent home through the child.
A plan of follow up procedures was outlined for the PSC at
schools and these included:
A post card invitation to be mailed to parents 2 weeks
after sending a Letter of Invitation
A phone call to non respondents
A phone call each quarter if there is no response.
Training: Pilot site coordinators (PSC) underwent 3 training
sessions over a period of 6 months conducted by researchers from West Virginia University (WVU) at meetings coordinated by the West Virginia American Lung Association (WVALA) and West Virginia Department of Education (DOE)
Parents either refusing to participate through a written refusal and those not responding to successive follow-up attempts via phone \were assumed to be unwilling to participate in the project. The students who attain poor scores on the ACT (Fig ) were targeted for an asthma education and an AAP evaluation.
Human subjects approval: Approval of the project was obtained from the WVU Institutional Review Board (IRB) for subjects’ participation in research . For compliance with the IRB, all data were de-identified before sending to the WVU researchers.
RESULTS
Participation and demographic characteristics:
Out of the potential 55 students, 19 subjects (Fayette=4; Raleigh=16) completed the IRB approval consent and assent forms. The PSC collected data on 11 of the 19 subject:
Demographic data collected from the participants included variables such as age, gender and county.
Schools in Fayette County were served by an SBHC whereas both schools in Raleigh County had SNOs.
School absenteeism, hospital visits, ER visits and SNO/ SBNC visits:
Variables that were measured included number of days absent from school due to asthma, number of days absent from physical education classes due to asthma, number of SNO/SBHC visits, the number of hospital/ER visits outside the school and the number of days hospitalized due to asthma in the preceding 3 months (Table 1).
Fayette County
Raleigh
County
Average number of absent days due to asthma
<5
<1
Number of absent days due to other illness (N) 21
<2
Number of physical education classes missed due to asthma (N) 4
Hospital visits due to asthma (Y/N)
Number of days hospitalized due to asthma (N)
Number of ER visits (N)
>1
Number of SNO/ SBHC visits (N)
Number of calls to 911 related to asthma (N)
Number of urgent care visits (N) 3
INTRODUCTION
Asthma is the most common chronic condition and the leading cause of school absenteeism among children. According to estimates, asthma affected 8.9% of children 0-17 years old in 2005 and accounted for 12.8 million school absence days in the United States in There were nearly 13,000 asthma cases in public schools, accounting for 21% of the 62,000 school nurse cases that year.2 School Nurses are in an ideal position to implement interventions to minimize adverse outcomes of asthma. According to the National Heart, Lung and Blood Institute (NHLBI) guidelines,
effective asthma management requires the
creation of individualized treatment plans
(asthma action plans) for each patient to
help minimize symptoms and prevent acute
attacks.3 To provide appropriate timely
medical attention to the children, parents
and school health personnel should collaborate in regular monitoring and interpretation of findings appropriately.
Objective: The objective of the study was to assess control of asthma in school children using the asthma control test (ACT) and to engage parents in collaborating with school health personnel to improve the asthma management skills of rural children.
CONCLUSIONS
Parental consent to allow students to participate in the project was surprisingly low in relation to assumed severity of asthma in children in this age group in school.
The pilot project showed the feasibility of the study to address asthma in underserved children who attend schools with minimal health access resources.
A similar school-based intervention study for asthmatic children in Preston county, WV identified parents’ perceived fear of their child being isolated, infringement of privacy and discomforts with research as major factors responsible for their non-participation in the research study.
Based on the findings of the pilot study and reports from previous studies in rural communities of West Virginia, implications for further scope of research to understand and address barriers to parental participation can be deciphered.
ACKNOWLEDGEMENTS
The researchers at WVU gratefully acknowledge the resource funds provided through the WVAC Schools and Pediatric Committee and the personnel resource and co-ordination support provided by:
American Lung association-West Virginia (ALA-WV),
Bureau of Public Health –West Virginia (BPH) and ,
West Virginia state department of education (WV-DOE).
REFERENCES
Hillemeier MM, Gusic ME, Bai Y. Rural and urban children with asthma: are school health services meeting their needs? Pediatrics Sep; 118(3):
National Asthma Education and Prevention Program. Expert Panel Report 3 (EPR-3): Guidelines for the Diagnosis and Management of Asthma-Summary Report J Allergy Clin Immunol Nov; 120(5 Suppl):S Erratum in: J Allergy Clin Immunol Jun; 121(6):1330.
Kielb C, Lin S, Hwang SA. Asthma prevalence, management, and education in New York State elementary schools: a survey of school nurses. J Sch Nurs Oct; 23(5):